thank you

We are deeply humbled and extremely grateful to share that Jack was chosen as the first patient in the US clinical trial for SPG50 gene therapy and received his dose of Melpida in February at UT Southwestern Medical Center. To be able to say those words just under a year after his diagnosis is truly a miracle.

We have a long road ahead. Jack is currently on an immunosuppressive drug protocol so that his body will not fight the new gene, and he has a lifetime of intensive physical, occupational, and speech therapy in front of him. It will be years before we start to understand what the treatment will actually do. But there is hope. Real, tangible hope.

We owe everything to Terry Pirovolakis and CureSPG50, without whom this treatment would not exist. It is impossible to convey how astonishing it is that Terry created this gene therapy from nothing in 3 years. He is a force of nature. His determination, endurance, and love for his son made miracles happen.

We are forever grateful to the gifted team at UT Southwestern who have taken incredible care of our little boy every step of the way, in particular Dr. Susan Iannacone and Dr. Souad Messahel. We have had some scares throughout this process and we owe Jack’s life to their expertise and dedication.

We are incredibly thankful to Dr. Steven Gray and Dr. Xin Chen at UT Southwestern who, even throughout the Covid pandemic, made sure that the experiments, tests and designs required to get to a clinical trial, were performed.

To all of you who have joined us in Jack’s Corner…thank you with all of our hearts for the incredible generosity, love, and support you have given us. You listened to our story and believed in giving children with SPG50 a chance to live the lives they deserve. We are here today because of you.

From small beginnings come great things. Jack is just one child who now has hope to live a full life. There are many more who deserve that hope, and we are committed to ensuring they get it.